Peering into the free souls in their gradually frozen bodies, approaching three patients with ALS, the world is gradually freezing. On the eve of Human Day, the body is frozen, and the body is frozen

There is a group of "gradually frozen people" in the world: they suffer from ALS, their bodies will be frozen like ice and snow, watching their strength be eroded by the disease, conscious but powerless, the deprivation of power is slow and irreversible, until death arrives.

ALS is a rare disease. Many people know their existence through Hawking and the Ice Bucket Challenge; In recent years, the life experiences of Cai Lei and Zhang Dingyu in China have attracted more attention to this group. June 21st is World Day of Freezing People. Prior to this, we interviewed three patients with ALS in Shanghai and glimpsed their free souls in their gradually frozen bodies.

"Giving to others allows me to discover the unique value of life"

"Can you coexist peacefully with your inner self?"

This is the question of the soul of the famous autobiographical documentary novel "Meet on Tuesday". Murray, an American social psychology professor suffering from gradual freezing, and his students talk about life perception every Tuesday. It is also a question that Zhu Changqing often thinks about.

On December 4, 2011, "The Last 14 Tuesday Classes" adapted by Taiwan's Guotuo Theater entered Shanghai for the first time, and Zhu Changqing, the founder of the first domestic neuromuscular disease professional website, was invited.

Under Zhu Changqing's appeal, many patients with gradual freezing disease entered the theater for the first time. "The Last 14 Tuesday's Class" became the first play they watched in their lives. Many people are laughing at the beginning, but when the play is about to end, tears flow through their faces.

Zhu Changqing is an associate professor at Shanghai Second University of Technology and also a patient with ALS. In order to help more people understand the survival status of the gradually frozen population, she has been devoted to public welfare undertakings that care for the gradually frozen population since 2002. She has founded websites, foundations, and volunteer groups... Over the past 20 years, she has been dragging her body and her actions have never stopped.

In 1991, Zhu Changqing's brother was diagnosed with ALS after several misdiagnosis. After examination, Zhu Changqing was also found to be a carrier of genes related to ALS. At that time, there was still no understanding of this disease in China. In order to treat his brother's illness, Zhu Changqing went to Japan to seek medical advice and, with the help of friends, learned about the latest medical developments internationally.

In 1992, Zhu Changqing, who taught at Shanghai Second University of Technology, took the bus to class every day. Once, after getting off the bus, his feet became weak and he collapsed on the ground, unable to get up. "After this fall, I knew I wasn't a carrier, but a patient."

After falling ill, Zhu Changqing did not feel depressed, but with the support of his old father, he embarked on a different path.

In 2002, she founded the Neuromuscular Disease Association and self funded the first professional website for neuromuscular diseases in China, providing rehabilitation, prevention, care and other information for patients. When she was still able to walk on her own, she attended the International Conference on Neuromuscular Diseases in Canada alone. During the 7-day meeting with numerous sub venues, she relied solely on her own legs to travel throughout. After the meeting, she followed up with experts to exchange ideas and invited them to give lectures in Shanghai. It wasn't until the last two days when she was too tired and her gait was disrupted that the experts and scholars realized that she was also a patient with ALS.

Zhu Changqing was the torchbearer of the 2008 Paralympic Games

After encountering more and more patients, Zhu Changqing found that society did not pay enough attention to gradually frozen people. "Many children cannot enter schools and some cannot find jobs. Therefore, she will shift her focus from medical care to education, people's livelihood, and other aspects.". Nowadays, the Shanghai Charity Foundation's Zhu Changqing Care for Freezing People and Rare Disease Fund has multiple brand projects, such as "If I Can Walk for Three Days Summer Camp". They usually provide services for patients, including fundraising, teaching, rehabilitation, nursing guidance, and distributing nursing nutrition subsidies. They also promote policies in terms of education, employment, medical treatment, disability assessment, long-term care insurance, and other assistance and protection for freezing people.

Zhu Changqing organizes outings for friends with ALS

Zhu Changqing, who has been ill for over 30 years, now lives alone and relies on a nanny to take care of her daily life. Her legs are no longer able to walk, she needs help standing, and she cannot take care of herself, but her energy and spirit are still full. Recently, she has been busy preparing for the upcoming 21st China "June 21st World Freezing Day" heartwarming love thawing public welfare event, and this annual public welfare activity has been ongoing for 21 years.

Regarding the question about the soul in "Meeting on Tuesday", Zhu Changqing did not directly answer it. She said, "Sometimes I feel like I have to thank this illness, otherwise I would just be an ordinary teacher, daughter, wife, and mother. But now I have learned a lot, and fighting against 'gradually freezing' has allowed me to constantly break through the boundaries of life and live a unique life value."

As Professor Murray asks his students in this book, "Why do I still care about others? Am I not suffering myself?"

This is a sharp question. Mori himself replied, "Of course I am suffering, but giving to others can make me feel alive. Cars and houses cannot give you this feeling, nor can the reflection in the mirror give you this feeling. Only when I dedicate time and make those sad people smile again, can I feel that I am still as healthy as before."

"Spread love pollen like little bees"

Tang Xu, a patient whom Zhu Changqing once cared about, is now a boy in his thirties.

He is a busy IT engineer. On the noon of June 12th, Tang Xu specially set aside his lunch break and waited for reporters at the front desk of the company, sitting in an electric wheelchair.

In 2012, when the reporter first interviewed Tang Xu, he was still studying at Shanghai Maritime University. In the final exam of his freshman year, he ranked 8th among more than 100 students in the computer science department and became the first formal party member in the class.

In front of Tang Xu, with a flat cut and glasses on, his appearance has not changed much compared to 10 years ago, and he still relies mainly on his right index finger for movement. However, he felt that "the body's load-bearing capacity is worse than 10 years ago, and sitting for a day makes it easier to get tired."

In April 1991, Tang Xu was born into a poor peasant family in Suqian, Jiangsu. At the age of 9, he was diagnosed with ALS. By the time he was in his teens, his condition had progressed to a point where he completely lost consciousness below his chest, and only his right index finger could move slightly.

In order to take care of his son's illness, Tang Xu's father was the first from his hometown to come to Shanghai for work and sent Tang Xu to study there. After completing primary and secondary school, Tang Xu was admitted to the School of Information Engineering at Shanghai Maritime University. After graduating from university, Tang Xu succeeded in becoming an IT engineer. In addition to his busy 8-hour work schedule, he also spent two years developing the "Little Bee Accessible" mini program with his college friend Cai Biqi in his spare time.

Tang Xu is at work. Photo by Zhou Nan

"I have received countless help along the way, so I have always had a dream of giving back to those who have helped me," Tang Xu said. Through this mini program, more people with disabilities can be assisted in convenient travel, providing them with information sharing, communication, and inquiry of accessible facilities. And the reason for naming it "Little Bee" is to hope to "spread the pollen of love like a little bee."

Tang Xu hopes that we can help showcase the "Little Bee Accessibility" mini program and encourage more people to participate

Tang Xu told reporters that any citizen can participate in the improvement of the mini program by taking photos, labeling accessible facilities, and uploading them at will. In the process of mini program development, relevant institutions, enterprises, and citizens in Shanghai also participate in data collection work. Mr. Fang, an enthusiastic citizen with a third degree visual impairment, collected and provided nearly 200 accessible information points in just over a month.

Tang Xu displays the content of the mini program. Photo by Zhou Nan

As of now, the number of accessible facilities available on "Little Bee" has increased from over 1000 to 9326 nationwide. The vision of "Little Bee" is that more and more disabled friends are willing to step out of their homes, allowing everyone to discover that this city is shining with humanity and tolerance, and everyone in it can feel kindness, equality, and respect.

"Every soul will find its own answer"

"Every soul will find its own answer"

Search for Japanese literature entries in Douban books, and in the works of famous writers such as Keigo Higashino, Mihiko Mori, and Chiaki Kizaki, you can see a common translator name: Feng Jinyuan. Over the past decade, he has translated dozens of comic and novel works, totaling over a million words. And people may find it hard to imagine that such an active translator is actually a gradually frozen person with only two fingers on his left hand and a pair of eyes that can move all over his body.

Feng Jinyuan, who fell ill and lost his mobility before the age of one, did not have the childhood of an ordinary child. When his peers went to school, he could only practice finger movements by the window. Fortunately, his mother hired a private tutor for him, which gave him a complete educational experience. At the age of 16, he made up his mind to learn Japanese, which gave his life a different color.

Feng Jinyuan, who grew up watching Japanese comics, has a great interest in Japanese. In 2005, Feng Jinyuan successfully passed his first exam and obtained the Japanese Level 1 certificate, ranking among the top 20 out of 5000 candidates in East China. Behind success lies several times the effort and dedication of ordinary people. At that time, the examination room was at Shanghai Foreign Studies University, and Feng Jinyuan was assigned to a single room where two teachers assisted him in flipping through the papers and filling out the answer sheet. Three hours of high mental concentration, coupled with the hustle and bustle of traveling back and forth in winter, made him suffer from a severe cold as soon as he returned home.

The game designed and developed by Feng Jinyuan has been launched on steam, switch and other platforms. He loves anime and hopes to communicate with more players through the network. Photo by Wu Yue

The professional certificate allows Feng Jinyuan to earn income through book translation and game Chinese text translation while balancing interests and hobbies. In his words, "the process of translation is simple: reading the original text, taking notes, translating, proofreading." However, only the translator knows that guarding a desk, the translator needs to cross the mountains and seas of words, carefully consider words and sentences, and ultimately present a work that is recognized by themselves and also recognized by readers. Feng Jinyuan has the courage and determination to "fight alone". He wakes up from 7 am to 8 or 9 pm every day, and as long as his physical condition allows, he works and studies at his computer desk. "For ten years, I have been working for more than ten hours every day, and I enjoy it."

In the past four to five years, Feng Jinyuan has relied on his strong learning ability to explore new fields and become an independent game developer. It's not easy to transition from the second party who took orders to the first party who created it himself, but Feng Jinyuan believes that "although it's inevitable to worry about the feedback after the game goes live and be affected by the results, I will still tell myself not to ignore the joy gained in the creative process." Sorting out his translation works, it will be found that Feng Jinyuan prefers adventure stories where the protagonist and his partner work together to overcome difficulties. He also continues this theme in game creation: even if it's not perfect, even if he has experienced trauma, as long as he bravely moves forward, he can gain growth and find his own direction in life

One person, one desk, one computer. In order to pursue his desired career, Feng Jinyuan has to work and study for more than ten hours every day. Photo by Wu Yue

Link: Latest Progress in Treatment of Gradual Freezing Disease

Link: Latest progress in the treatment of ALS

At present, there is no clear cure solution for ALS, and the World Health Organization has identified it as one of the "five incurable diseases.".

In 2019, the world's first drug for the treatment of SMA, Noxinasone Sodium Injection, was launched in China, but the price was high. In early December 2021, the National Medical Insurance Administration announced a batch of new drugs to be included in medical insurance. These "sky high priced drugs" encountered "soul bargaining", with costs reduced from nearly 700000 yuan/injection to 33000 yuan/injection, reigniting the hope of life for many patients.

On September 29, 2022, the US Food and Drug Administration approved the drug Relyvrio, developed by Amylyx Pharmaceuticals, as a new method for treating ALS. This drug is the first therapeutic drug to significantly delay the progression of ALS disease and prolong survival in randomized, placebo-controlled clinical trials. The Phase III clinical trial in patients is currently underway and is planned to be completed by the end of 2023 or early 2024.